Horrifying article in Sunday Times

"In America, where ME extremism is even more virulent, doctors have been hounded out of their jobs."

I'm sorry, but WTF???? There is no ME extremism I have ever come across here!
Granted, during the XMRV debacle I am sure quite a few things were said to researchers with dissenting opinions, but please someone enlighten me to the "ME extremism" that is happening in my country. It is NOT happening because patients here are NOT (for the most part) treated the way they are in the UK. This disease is widely accepted as a real physical illness here.

And why is the press/media so obsessed with ME in the UK anyways? Is the press an extention of the NHS?

And isn't it curious that CFS is RARELY covered in the press in America, where as it is CONTINUALLY covered in the UK? Hmmm...and where are patients treated better?

"In America, where ME extremism is even more virulent, doctors have been hounded out of their jobs."

I'm sorry, but WTF???? There is no ME extremism I have ever come across here!
Granted, during the XMRV debacle I am sure quite a few things were said to researchers with dissenting opinions, but please someone enlighten me to the "ME extremism" that is happening in my country. It is NOT happening because patients here are NOT (for the most part) treated the way they are in the UK. This disease is widely accepted as a real physical illness here.

And why is the press/media so obsessed with ME in the UK anyways? Is the press an extention of the NHS?

I found those comments to be confusing too. Hanlon mentioned Reeves and he seems to equate extremism with anybody disagreeing with the premise that ME is psychological. Basically, if you make any comment that ME is not psychological, you are an extremist. I am not aware of any faction in the US that is 'extremist'. I am aware that all of us don't appreciate that Reeves equated ME with stress. Speaking out with disagreement is not 'extremism', not even close. I remember what went on with in eighties with AIDS before it was called AIDS. It wasn't extremism, it was about the correct classification of a disease.

I noticed that Hanlon really didn't back up his statements about extremism in the USA with any proof. It's shoddy journalism to the max.

Mike Hanlon -- if you are reading comments on our forum. Please contact me, I would love for you to answer some questions here. Let's have a mature discussion about what's really going on. Do you want to hear from some real patients who aren't extremists. Come on then -- let's have a chat.

The UK's Establishment is desperately trying to cover up some huge and horrible crap
a whole load of "cans of worms" are coming to the surface whether they like it or not, whether they cover up lie and fudge or not.
last thing they'll want is another scandal at the same time, so as usual they'll sacrifice someone to appease "The Mob".

I bet that those dangerous militants are co-ordinating, and keeping lists of those they do not like - it's a fearsome conspiracy of sick and disabled people, targeting some of the most powerless people in society (Sir Wessely, White OBE, Sir Aylward, etc). Luckily, a brave crusading journalist like Hanlon is willing to fight in their corner, and provide a voice for those who are normally just cast aside. This would make a great movie.

lol at them keeping a list of active activists. ("It's really harassing... I have to keep making lists of people who haven't done anything wrong... they're making me do it to waste my time...") I wonder what one has to do to be classed as 'radical' or 'militant'? Make an FOI request? Ask a question, which they then choose to class as an FOI? Does one get a badge for moving up a slot?

Thinking of them having an 'active' category is really giving me some good giggles. I'd love to know the details of this list, who kept it, and who decided which name went where. What utter screw-balls.

The thing is, in America patients are advocating for treatment and further funds for research into a disease that has already been accepted by the vast majority of physicians as being a genuine physical illness. We advocate for further testing into subsets of this disease. Identifying pathogens, problems with the immune system, hormonal systems, sleep dysfunction, so on.

In the UK, they are still having to advocate that this IS a real disease.

How can these two countries STILL be so far apart? Is it simply because of the huge difference in the healthcare systems?

This would make me a militant? Despite that I was calling for peaceful protest not unlike the "Arab Spring" if the number dying from UK government policies got to a ridiculous level and no legal or other social recourse (e.g. petitions) was working? Or would it make me a radical? I can hardly be an activist because, well, I struggled just to get out of my unit today, and struggled harder to get back. I don't march, or engage in violent behaviour or threats of violent behaviour. Instead I emphasize reason and compassion - either of which appears to be lacking in the whole ATOS saga.

If Syria kills thirty people, ghast, NO, atrocity! It would not surprise me if the UK disability policy results in the deaths of that many every week, and yet there is not a boo from most people. Its just business as usual. The UK is an ongoing Syria atrocity with regard to the disabled, including the masses of people who are terrorized by their own government. Didn't a UK government spokesperson at one point say that governments in the Middle East who kill that many people lose their legitimacy?

So I am speaking of atrocity, use of terror as a state policy and total disregard for the mounting death toll: but its not me promoting this but current UK disability policy. I am simply wanting them to stop.

PS Or would all this make me Darth Alex to some, Jedi to others?

PPS In case anyone missed it, the PR blog is a copy of something I posted in the UK.

Thinking of them having an 'active' category is really giving me some good giggles. I'd love to know the details of this list, who kept it, and who decided which name went where. What utter screw-balls.

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ME patients are either passive or active (psych) cases according to Dutch CBT ... from what I recall, you go in the "active" category if you crash regularly. Nice of "them" to keep a list

Hi Valentijn, someone who thinks critically and carefully about the article may realize all these points. However, most people won't, and there may have been a cultural shift away from critical thinking which they are relying on (this is debatable, some make this claim but its hard to find solid evidence). Or is that just readers of the tabloid press? Alex.

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I'm afraid you are right, Alex. There seems to be a self-reinforcing cycle of 'dumbing-down' in this country, not least in the field of science. For example, producers seem to have forgotten that one of the founding principles of the BBC was to educate, and instead appear to target their programmes at the least-educated people for fear of going over their heads, so that whole half-hour 'science' programmes will often consist of one elementary fact padded out with a lot of repetition, waffle and silliness. This kind of approach also dominates other media. People are in turn influenced by it and become even less inclined and able to think.

It is also the case that both the printed and broadcast media almost always focus on extremes. For example, they will not want to report that thousands of people marched peacefully through London or signed a petition with reasonable, carefully-drafted demands, but they will almost salivate with delight at a few bandwagon-jumpers who set fire to something. As a result the important messages get completely lost.

I find CNN and Euronews refreshing in contrast, taking intelligent, in-depth looks at issues. Shame about all the ads...

She is such a dangerous militant activist and I hope MI5 and Scotland Yard sort her out for abusing and terrorising our poor victimised Simon Wessely for daring to question his authority with such questions!!!!!

She is proposing a "Patient Perspective" questionnaire about the "lived experiences" of ME patients and loved ones. I think it would be as a media project.
When she talks about 'loving the questionnaire responses', she's talking about the responses to her proposal, not the responses to the questionnaire, as she hasn't created it yet.